Posted: June 20th, 2012 | Author: KimT | Filed under: Media | No Comments »
Hello, everyone! My name is Michela Anderson, and like many of you, I have Russell Silver Syndrome. I’m petitioning to the writers of ABC’s “Once Upon a Time” to cast me in the role of Thumbelina. This would be the perfect vehicle to raise awareness for all growth disorders, raise funds for the MAGIC foundation, and show children like us all over the world that no matter how small a person is, anything is possible.
My story is that I was born a month premature at 3 pounds, 4 ounces. The doctors told my parents that I would be blind, deaf, mute, and basically, a brain-dead vegetable. Obviously, none of that was true. I was actually three months old before someone else re-diagnosed me with RSS. My new doctor started me on growth hormone injections at two years old, and I took them every night for eleven years, ending up at 4’11’’. At seven years old, I was diagnosed with precocious puberty, and had to start a monthly regimen of Lupron shots. I stopped taking them when I was 13.
I try and help RSS parents, especially new ones, understand more about the syndrome and what life for me has been like. This is what I tell them: “There is always hope. It may seem difficult now, but it will get better. It always gets better. The most important thing is to stay positive, because it will help you through the journey, and it will help your child in the long run. Keep going, and remember that you’re not alone. There are thousands of us in the world, and you’ll find us if you look for us. Sometimes, the greatest stories come from the tiniest bodies.”
Raising awareness for growth disorders is so important to me, because although I ended up healthy and happy as anyone could be, some children are not so lucky. With so many doctors not knowing the details of these disorders, the children aren’t properly diagnosed, or treated. Other times, the family can’t afford the medicine or specialists needed. By bringing attention to these disorders, we may be able to help children and their families all over the world affected them. If we can get the attention of the writers and convince them this is a good idea, we might just be able to make a huge difference.
If you care about raising awareness as much as I do, here are a few ways you can help:
1. Sign the petition here: http://www.ipetitions.com/petition/thumbelina/
2. Share the petition with your friends! Facebook it, youtube it, blog it, whatever!
3. Tweet this: “MICHELA ANDERSON AS THUMBELINA! #onceuponatime #michelaisthumbelina @michelasings @AdamHorowitzLA @jollychan4”
4. Join the facebook page! “Michela Anderson as Thumbelina on ABC’s Once Upon a Time”
Posted: February 23rd, 2012 | Author: KimT | Filed under: Medical, Support | Tags: Child Growth Foundation, RSS, RSS People Watch, Teens and Adults with Russell Silver Syndrome | No Comments »
On the 5th November 2011, 8 RSS teens and adults (including myself) met at the Hilton hotel, Northampton in the UK. 5 of the 8 RSS people attending are TARSS members.
From my own personal experience of having previously met only 1 of the RSS people registered to attend on a prior occasion, I was surprised to find that I was feeling somewhat nervous and a bit apprehensive as to how the weekend would go. Kim, nervous, apprehensive I hear you say in surprise, yes, I know so not like me usually!
On the Friday night I met the first RSS teen/adult. We glanced at each other in the distance in the hotel and then at the evening meal I mustered up the courage to go and introduce myself and ask if she was the lady I thought I recognised from her photo’s on the TARSS group and she was!!!!
On the morning of the conference I found out that as RSS adults co-ordinator for the CGF, I was responsible for hosting the RSS adults seminars including the first event which was a meet and greet session. After getting my head around the days tasks ahead I made my way around the hotel foyer looking for possible sightings of other RSS people.
After meeting the other RSS adults, we went to the first seminar which was the CGF AGM, then ‘us’ adults went to a separate meeting room and had a very informal ‘meet and greet’ session introducing ourselves in turn and a brief history of being RSS.
We then joined the rest of the conference attendees for refreshments. Then the RSS people had an informal discussion about questions/issues we would like to ask/raise with Dr Stanhope who was due to speak with us in the afternoon, I was then asked by the RSS division co-ordinator if the RSS people would join the parents for a seminar on RSS in adolescence/puberty hosted by Dr Kirk and Dr Toogood as the doctors asked if we would attend.
After lunch, and meeting more RSS families (great experience for all I hope) the RSS people met up again to have a discussion led my Dr Karen Temple who is a geneticist based in Southampton UK. Dr Temple came to talk to us about a research study she plans to get funding for and undertake into RSS in older people, while also answering some queries we had about genetic and health issues we as older RSS people experience. The Doctor was very interested in hearing about progress we as RSS people are making for ourselves with the TARSS group and also the rss-people.org website.
Following Dr Temple we were then joined by Dr Richard Stanhope who was keen to meet with us. After chatting with us and hearing our views, it became apparent that far more research needs to be done for RSS people, as many issues we have, Dr Stanhope had never heard of as being part/symptom of RSS, primarily due to the lack of research and studies after childhood.
A question and answer panel by RSS people for an audience of younger RSS kids. First off, I course, mentioned the TARSS group and explained my appointment as RSS Adults Division co-ordinator.
With a panel of six of the RSS people attending, we answered questions from parents on such topics as:
- “Our views of growth hormone treatments”
- “If we felt parents should tell their kids about RSS and how they should tell them”
- “Do we feel our parents made the right decisions on our behalf when we were young”
- “If we had a child with RSS would we choose growth hormone treatment for them” etc
The day was finished off with a well-earned drink from the bar and a disco for the kids, with one very tired and somewhat emotionally drained RSS adult co-ordinator!
6th November – Day 2
The following morning after breakfast there was one last chance to meet parents and RSS people to see what we got out of the conference. Most of the parents expressed that they found meeting the RSS people and listening to the Q &A panel with them one of the most beneficial and inspiring events of the weekend.
After this last session, myself and another RSS adult who was still at the conference were asked if we would also consider arranging a seminar/workshop with RSS kids aged 10 upwards next year for them to chat with ‘us’ and feel free to ask us anything about life as an RSS person.
To have 8 RSS people in one place was amazing to me. It was the first conference for the CGF that more than 3 RSS adults had attended at the same time. Being the co-ordinator for the RSS adults division I hope that all the RSS people felt that they were catered for as regards information/seminars rather than just being with the parents and joining in their seminars which really are not relevant to us.
I hope this year is a huge leap forwards in raising awareness for RSS people and the need for support for ‘us’.
My dream and vision for the TARSS group keeps on growing and this conference has really showed how powerful, positive and progressive RSS people can be not just in their own lives, but also in the lives of parents of younger RSS kids and also to the kids themselves. As we can help them embrace their uniqueness and special talents that they can give to society and others.
I look forward to next year’s conference, hopefully meeting new attendees and also catching up with existing friends.
Posted: December 13th, 2011 | Author: Editor Steph | Filed under: Life-Stories, Media, RSS People Watch | Tags: Documentary, ITV, The Real Thumbelina | No Comments »
For those of you in the UK who missed the above documentary on ITV1 on Monday can watch it on the ITV Player. It follows 4 year-old Amelie and her parents journey to the USA to find out more about Russell Silver Syndrome.
It was great to see both sides of the growth hormone debate and as a non-GH RSS adult it’s always hard to see parents worrying about their children not being ‘normal’ if they don’t have treatment, especially having gone on to achieve everything I hoped to do and more as a person 4ft 4″ height. It was very much appreciated to see Zillah’s contribution that you can be 4ft -odd and still be ‘normal’. I hate that term ‘normal’. People with Russell Silver Syndrome, are that, people, who need that bit of extra support throughout all stages of life. That said, what would any of us do if we had a child in the same decision and most of us are aware that it is people’s own choice.
Personally I would have liked to see more non-GH adults participating, say a comparison of what life is like as a RSS person who has had GH as opposed to RSS people who have not – but then that could be a documentary in itself.
A more balanced documentary than expected. Definitely worth a watch and it’s great that awareness of Russell Silver Syndrome has been raised on a mainstream terrestrial channel and to a wider audience.
Here’s the link: The Real Thumbelina Documentary »
(This documentary is only available to view in the UK and watch-able for another 28 days)
Posted: November 2nd, 2011 | Author: Editor Steph | Filed under: RSS-People-Website | Tags: Columnists, Contributors, Russell Silver Syndrome | No Comments »
While the RSS-People.org website has been quiet of late, things are beginning to stir in the background. To help keep the content on this website fresh we are looking for regular contributors, who would be willing to write one article a month on their chosen subject.
Columnists Needed In Following Subject Areas
The main areas we are for contributors in at the moment:
- Independent Living
- Travel and Mobility
- Positivity and Self-Esteem
- Job Hunting / Careers Advice
- Teen/Young Adult experiences of living with RSS – Day in the Life
The subjects above preferably need to have a RSS angle, so the contributor must have experience of what life is like for a person with dwarfism and the challenges faced.
Skills and Post Requirements
We would prefer that the contributors have RSS, however, we would warmly welcome, posts or articles from professionals in the above fields.
We ask that you commit to a minimum of 1 blog post per month, for a minimum of 3 months. Each article needs to be around 500 – 1000 words and delivered in a plain text format.
Sadly we cannot provide any remuneration, but we are happy to provide space for a short bio at the end of each of your posts with a link back to your own personal website or blog.
We’d love to welcome you to our team, so if you are interested in applying – please contact us with the following information:
- Your name
- Your email address
- Short example of your current writing (links to your portfolio or existing writing)
(we are also happy for people who do not have online writing experience to join us, please write a short piece on your chosen subject so we can get an idea of your writing style)
- A brief description as to why you want to contribute to the website
There is more information about further subjects we are looking for on our Get Involved page.
Posted: November 2nd, 2011 | Author: KimT | Filed under: Support | Tags: Child Growth Foundation, Conference, Facebook, Northampton, TARSS, Teens and Adults with Russell Silver Syndrome | No Comments »
The Child Growth Foundation is having their annual conference on the 5th November 2011, and for the first time more than 3 RSS people have registered to attend the same conference.
At the momemtnt 6 RSS people have registered and 5 of them are members of the Facebook group TARSS (Teen and Adults with Russell Silver Syndrome). Having been in contact with each other through the TARSS group it is incredibly exciting prospect to finally meet each other in person.
Speaking with parents of RSS children, who are also getting ready for the conference, they are really looking forward to chatting with RSS adults to find out what life is like as an older person with the syndrome.
The CGF have organised a few seminars for RSS adults attending, including a talk by a geneticist from Southampton who is going to explain to us about genetic testing for RSS people. This is due to the fact many of us have never had this testing, and also she is going to discuss the possibilities of undertaking a research study into RSS in adulthood. The Doctor hopes TARSS members will play an important role in facilitating this study and its outcome.
I hope all attending have a positive experience and that the important need to support RSS teen and adults continues to be recognised and pursued by all growth foundations.
I will post another article after the conference with experiences and highlights of the event.
Posted: October 17th, 2011 | Author: Editor Steph | Filed under: Medical | Tags: MAGIC Foundation, Medical Study, RSS | No Comments »
RSS-People.org have been asked to help spread the word about the USA-based medical study into scoliosis and kyphosis. The RSS division of the MAGIC Foundation hopes to expand on the current research into Russell Silver Syndrome, building on the solid foundations of studies into genetics and growth hormone. Below you can read about the background to the study, what it hopes to achieve and, most importantly, how you can participate.
Soon enough you will learn about the new MAGIC RSS/SGA Research and Education Fund …. but to start things off, Children’s Hospital Los Angeles (CHLA) and Jennifer Salem from MAGIC are doing a study on RSS individuals and scoliosis and kyphosis.
To participate you need to sign the consent forms and complete the survey that is available on-line or in hardcopy. It should only take about 5 to 10 minutes to complete. You do NOT have to have scoliosis or kyphosis, you or your child just need to be diagnosed as possible or confirmed RSS.
MAGIC is eager to create more studies on RSS to get published, not just ones on genetics or growth hormone therapy. But we need your help!!! Please can you give 10-15 minutes of your time? You can fill out the consents and do the survey right from your own home!!
If you are interested in participating, simply email Jennifer at magicrss [at] mindspring.com and say “I am interested” and Jennifer will forward you the CHLA introductory letter and the study documents.
Please note www.rss-people.org is not affiliated to MAGIC, but is here to help organisations dedicated to advancing the knowledge and help and support of living with Russell Silver Syndrome.
Posted: July 21st, 2011 | Author: Editor Steph | Filed under: Fashion | No Comments »
We’ve updated the Petite Ladies Shoe page on the website with a few of additional websites suggested from members of the TARSS group. Also happy to announce that Nordstrom are now shipping to the UK. Yay!
Go to Petite Ladies Shoe page »
Posted: July 4th, 2011 | Author: Editor Steph | Filed under: RSS-People-Website | No Comments »
Like our Facebook page
We’ve set-up a Facebook page for you to get involved with our community. It’s for those who support people with our medical condition and for those who want to keep up-to-date with the latest news on the website.
So if you get chance, hop over to Facebook and give us a ‘Like’ and introduce yourself, we’d love to meet you.
Like the RSS-People.org Facebook Page »
Posted: July 4th, 2011 | Author: Editor Steph | Filed under: Life-Stories | No Comments »
My name is Brian. I was born just outside St. Louis, MO. My birth weight was 3 lbs., 15 oz., and I was 15 ½ inches long. My Mom is 5’1” tall, and my Dad is 5’9” tall. It wasn’t until I was 9 months old that I was diagnosed with Russell Silver Syndrome. My parents never held me back, and I started kindergarten when I was 4 years old.
I was always the smallest kid in my class, but either I didn’t realize it, or I didn’t care. When I was 7 years old, my family moved to the Denver, CO area due to my dad getting transferred with his job. I adjusted well and quickly made friends. Honestly, that’s never been a problem for me. I have a good sense of humor and was always considered to be the witty and clever kid in my class.
Being small always drew attention from other people, and I relished it. I was also born with a natural talent for playing drums. I started playing when I was 4 years old, and by the time I was 5, I was traveling with my parents gospel group. I’ve never really thought of my size as a hindrance, but as a way to get people to notice me. I felt blessed because while some kids fought to stand out from the crowd, I automatically did thanks to RSS.
My doctor started me on Human Growth Hormone shots when I was 8 years old. While I didn’t enjoy having shots every day for 7 years, I appreciated the results. I went from growing about 1 inch per year to about 4 inches per year on the shots. The only doctor that would treat me for RSS was located in Kansas City, MO. So we made several trips a year from Denver to Kansas City to check in with the doctor and see how I was progressing. I was an only child until I was 11 years old when my parents decided to take in foster children. My brother and sister (who were both adopted by my family as babies through the foster care system) are both average height.
I played both baseball and basketball all the way through middle school, but it was obvious my talent was in playing drums. I have asymmetry and the left side of my body is bigger and longer than my right side. I wore a lift on my shoe until I was 12 years old when I had my right leg lengthened 2 ½ inches. It was a long and painful process, but I’m glad I had it done.
I continued on through middle school and high school and was a very popular kid wherever I went. I was never ashamed of my size and I didn’t shy away from making friends. I found my identity through music and playing drums. My high school and college years were really a great time in my life. I moved to Nashville, TN in 1997 to play drums professionally, and I did that for about 7 years.
I was fortunate enough to have seen 48 states and several different countries through my travel with music. I had a few average height girlfriends throughout my school years, but I didn’t find the love of my life until I was 29 years old.
I met my beautiful wife Jenny online through a dating website. I had narrowed my search to include only women that were 5 feet tall and under. My adult height is 5 feet tall, and I decided I wanted a girl whose eyes I could stare into without having to get on a stepladder.
Jenny met that criteria (as well as many other important criteria) and we began to date. Within 11 months of first meeting online, we were married. Five months later we became pregnant. I had always wondered if I could have children, and if so, would I possibly pass on RSS to them. I didn’t really know any other adults with RSS, much less any that had children. Thankfully we had a beautiful little girl with no traits of RSS. She is now 6 years old and growing like a weed! While Jenny and I both expect her to end up being a little short, we also expect her to be taller than us.
My Christian faith plays an extremely large part in my life. I was raised in the church and am very thankful to my parents for the heritage I was given. We are active in our local church and have a very solid social network comprised of friends and family. I work in the call center for a major research cancer clinic and I’m continuing to work my way up the corporate ladder. I don’t feel that my size has ever hindered me from getting where I want to go professionally. I’ve lived the ups and downs of life just like anyone else. But overall I’m extremely blessed and wouldn’t change a thing.
Posted: July 4th, 2011 | Author: KimT | Filed under: Support | Tags: Facebook, Support, Support Group, TARSS, Teens and Adults with Russell Silver Syndrome | No Comments »
I can’t believe it has been 6 months since I created the TARSS (Teens and Adults with Russell Silver Syndrome) online Facebook group. From the creation of the Facebook group I have seen positive continuous progress in the number of members, number of posts and number of comments.
We currently have 66 members from various parts of the world, Scotland, England, Wales, Ireland, Channel Isles, USA, Spain, Chile, Estonia, Argentina, Italy and Finland. The various topics that we’ve been chatting about include:
- Issue of growth hormone use
- Social issues
- Health issues
- Humorous experiences
The teenage members are finding the group a positive resource in accepting and making the most out of being a person with Russell Silver Syndrome. The older members are enjoying sharing experiences with each other knowing that most of us have gone through and experience similar issues.
I can only speak for myself but I have found the group to be a really positive step in helping to raise awareness and support for Russell Silver Syndrome after childhood. Although the group is totally independent, I am in contact with the Child Growth Foundation in the UK and the MAGIC in the USA and hope to help them further the needs of people with RSS.
All RSS teenagers and adults are welcome to join the TARSS group, please contact me through Facebook or via the link available on this website if you wish to join.
Here’s to the next 6 months and more progress!!!